Opinion 1 July 2015

Counting the cost

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A while ago there was a study released about the costs of raising a child on the Spectrum, which placed the costs at around $35,000 a year. When you first hear that number, it seems like a lot. $35,000 could buy you a nice new car, maybe a luxury overseas holiday or just imagine the shoes!

But when you start to break it down, it’s not actually that much. Firstly, research suggests that to raise a ‘normal’ child you’ll be looking at an average cost of $19,300[2]. If we use that as a crude starting point, then the difference between the two is $15,500.

Let’s take a look at what might be included in that.

Therapy

It’s an obvious point, but most people assume that therapy is covered by Medicare.

However, unless your child is under 7 and is receiving the Helping Children with Autism package, then there’s a good chance you’re either paying for it in full, on public wait lists or subsidising the costs through private health insurance and topping it up with Medicare when you can.

My daughter Poss’ therapy needs change month to month, sometimes week to week, however on average we’ll spend about $620 on psychologists, speech pathologists and an occupational therapist each month. About $280 of that will be returned to our pockets through either private health insurance, or meagre Medicare rebates.

Of course, if you’re doing a program like ABA, then you can expect to pay a whole lot more than this.

Total – $4080

Social skills

Most kids on the spectrum will probably need, or at least benefit from Social Skills therapy at some point or another. We were recently quoted $2080 for a terms worth of the program, and Poss will likely have to do at least a years worth for her to get the full benefit of it.

Total – $8320

Medications

At the moment, we’re fortunate that Poss is only taking Melatonin to help her sleep at night. However in the past we’ve had her on a whole variety of things, which of course all add up. But for the purposes of this, we’ll just look at Melatonin.

It needs to be made up at a compounding pharmacy, and it’s not covered by Medicare. This means we can access a small refund via our private health insurance, but basically we’re on our own.

We recently found a pharmacy who charges us the reasonable fee of $45 for a months worth, however in previous years, we’ve paid up to $120 for the same amount. Fair to say it varies! I’ve based the below on the cheaper cost.

Total – $540

Pediatrician

We see our fabulous Pediatrician every 6 – 8 weeks or so. She is Medicare rebated, and worth every cent. Our last appointment was $210, and I think we got about $80 back on Medicare, leaving us out of pocket about $130.

Total – $780

Private Health Insurance

We have one of the top covers at a family cost of about $280 a month, because it’s the only way we can get back as much as we can on therapies. I’m still not convinced it’s not a false economy, but for the moment, it’s what we do.

Total – $3360


We’ll stop here, because I’ve already blown budget difference of $15,500. And that’s without even looking at the list of other things I had bouncing around in my head.

  • Lost income as I had to leave my job and be at home with Poss when she was first diagnosed. I remained home for a number of years, before being only able to return part time. It’s only in the past year that I’ve been able to work full time again.
  • The cost of the actual diagnosis itself, which if you pay for privately can run into multiple thousands of dollars.
  • The untold number of therapy aides; clothing, weighted blankets, visual clocks, sensory and fidget toys.
  • It should be free, it’s often not.
  • Therapy and support for myself and my husband as we learn how to be the best parents we can be to our daughter.

We also pay for a private school, because I’m terrified that Poss, who is too high functioning to receive funding in the public system, would slip through the cracks, never to be seen again. Of course, that’s a personal choice, but one I wish we didn’t have to make.

When people tell me that they can’t fathom paying for the NDIS in their taxes, or they whinge about money going from the budget into helping those with special needs, I have to bite my tongue.

These costs can befall any family, at any time. None of us ask for it, but every one of us would spend it a million times over if we had it and we thought it would help our child.

By putting aside adequate funds to support those with different abilities, we enable proper support, early intervention, and in time empowerment for those people to be independent, shining andcontributing to society.

As far as I’m concerned, if the NDIS is the cost of making those things happen, it’s worth every cent.


 

[1] http://www.abc.net.au/news/2014-09-14/wa-study-puts-price-on-autism-diagnosis/5737070

[2] http://www.sbs.com.au/news/article/2014/07/03/comment-debunking-cost-children-argument

Join the conversation

  • Lou

    My daughter, 8yo, high functioning autism, continence issues, severe language disorder, receives some funding in mainstream primary. I am yet to find information on how she will/ or won’t be funded through NDIS. How do we find out and what criterias are they using? Hoping she is able to access some assistance to help with therapies. As you mention, she now receives no assistance at all due to being over age of 7!! The ‘hidden’ costs of raising a child with autism is substantial.

  • My just turned 3 year old was diagnosed with ASD in January. We are in a launch area for the NDIS. I feel for parents in other areas with older children, especially those on low incomes. You are right, illness or disability can happen to any family, any time.
    For the other posters below, have you looked at the ‘My Access Checker’ on the NDIS website?

  • Kwbailey

    My son was diagnosed at 8yrs, Aspergers. A year later, we are still trying to get him into all the services & help he needs. So many things we can’t get help accessing – OT, counselling, Speech Therapy (been on public wait list for ENT over 2 yrs) anger & stress management, just to name a few. Also now needing regular weekly tutoring, to keep up with school. And then, with the great possibility of having ADHD as well, will mean a whole new lot of things to deal with. Factor in we now pay for independent schooling, having changed because of extreme bullying & teacher ignorance, at a govt public school. These extra expenses have to come out of my pocket (and this isn’t even taking note of our own financial position). So now, my son can’t get to access all of the services he needs, services other ASD children need, because he was handed his diagnosis a year too late. Never mind the fact if his previous teachers weren’t so ignorant, he may have been diagnosed earlier, in time to access help. If only the teachers at his previous school had realised that all of the problems they kept saying our son had, even giving reasons why he was ‘possibly’ being targeted, were insteadactually characteristics of Aspergers.
    It isn’t fair, that there is an age limit, in deciding who does or doesn’t get help. Every single ASD child, & their familes, are impacted the same way. Try to imagine, how hard it is for my partner and I, facing the realisation each day that, because of our financial hardship situation, we can’t give him everything he needs, to help him live the best life he can. And there is no where else we can go to get help. Trying to fit in, in this world is hard enough.